Thursday, December 31, 2009

To my wife

I have just reviewed my first poll and the sad conclusion is: The World does NOT revolve around Kurt. Only 2 voters thought so, and I have to admit... I was at least one of them. (There is no proof at this point that I was both)

I thought I would take a moment and document what my wife, Melissa, is doing through all this. She has gone with me to my appointments (almost all of them), been unfailingly positive when I needed her to be, wittily clever in discussions, sarcastic and derisive when that was called for, and generally the most supportive partner a person can have. So... 4,500,227 points! That's right, that would be MILLION! I'm going to be forever catching up but here is a start: bellicose, germaine, blandishment, urbane, and incontrovertible.

(For those of you that don't know, my wife and I play a game where we award each other points. Generally, 1-4 points are awarded at a time and for the most part they are awarded for using infrequently used words in random conversation. Points have been awarded for other things, but conversational literacy is where it started. Points may not be awarded if the witty rejoinder was planned or forces. In fact, points have been known to be removed. I believe I was ahead until just a few seconds ago.)

I worry that Melissa won't have the support she needs during all this hospital, surgery, recovery stuff. But my mom, her dad, my dad, and other assorted family members will be down in Dallas during that time. So now I'm worried that she'll have TOO much support.

So, to my wonderful wife. Thank you. It's not enough and never will be. But you 'da bom baybee.

Monday, December 28, 2009

Last Work Week

This is my last work week before I leave for Dallas. I've received my paperwork from my craniofacial guy and I have some pre-surgery testing that needs to be done on the 6th. I have to get a physical, get pictures taken (I guess for the before and after stuff - just to prove I didn't look like David Boreanaz BEFORE the surgery), go through admissions training (?!?).

I feel morose. I remember telling someone at some point that I would not be discussing feelings. That I don't actually HAVE feelings. That instead of feelings, I had MATH. So..



There you go. Math AND Chemistry. There must be LOTS of feelings!

I still do not have the list of pre-surgery tests in from my neurosurgeon, so I guess I will call out and get that straightened out tomorrow.

Days to Surgery - 11.

Thursday, December 24, 2009

Happy Holidays to you and yours!!!

Melissa and I drove to Louisville today. And yesterday. In fact, we were supposed to drive for 9 hours straight thru starting this morning, but we got word. There was to be a veritable white-out in Kansas City this morning. Ice, fog, sleet, hail, rain, fire, you know... The whole nine yards.

So we left. We just looked at each other, simultaneously suggested we leave early, when it was just raining, and we packed and left.

We drove until I got tired (12:30 am) and stayed at a Comfort Inn on I-70 in Kingdom City. We slept in, woke up this morning and left again for Louisville. At 11 am I looked at Melissa and said "You know, if we had gotten up at 5 am this morning, packed, left at 8 am and drove straight thru, we'd be right about.... here!"

Some might ask how this is relevant to my surgery. It's not. I'm having intracranial surgery and might come out looking like The Hunchback of Notre Dame (don't ask me how. It could happen). So, leave the blogging to me.

Anyway, we drove the rest of the way to Louisville uneventfully and we are spending Christmas with my mom. Happy Merry to everyone! Have a great Holiday!!!

Tuesday, December 22, 2009

Me, me, me, me, me, me, me...

The surgery is 17 days away. There are 4 weekend days in there. There are 4 Holiday days in there (if one counts Christmas Eve, Christmas Day, New Year's Eve, and New Year's Day as holidays). Remove those 8 days and that leaves 9 days until the surgery. 3 of those days are going to be taken up by pre-surgery testing and one of those days is consumed in driving to Dallas.

That leaves 5 business days to arrange for insurance coverage (done), disability insurance paperwork filing (not done), FMLA paperwork filing (half-done), and receiving paperwork from the physician's office that detail those tests I mentioned earlier. I still do not have those papers.

Which brings me to today's topic. Either the world revolves around me or it doesn't. In a whirlwind of less than a month, I have been to see 5 surgeons, had 2 CT Scans, had 5 radiologists read them, one MRI, another 2 radiologists, and 2 visits with a family practice physician. All this has occurred in the same time frame usually required to get in to see my family practice physician for a physical exam. I am starting to think these people are REALLY interested in my bump. Is it an osteoma? osseous fibroma? atypical fibrous dysplasia? bone hemangioma? Whatever it is, I am most definitely a FASCINOMA!

So... there are grounds to believe the world revolves around Kurt.

"Then where's the paperwork?", you might ask. This paperwork defines the tests I am to have pre-surgery. It defines where I go, who I see, what time I have to be there, etc. All of the things that HAVE to be accomplished before I can get to the O.R.

Where is it? Still at the craniofacial surgeon's (cfs) office. It appears that the staff at the neurosurgeon's (ns) office aren't keeping in touch with the staff at the cfs's office. Obviously they did not get the memo. The "Revolviong Kurt" memo.

I spoke with a young lady today at the cfs's office. And in typical healthcare fashion, when she heard the anxiety in my voice and the consternation regarding lack of paperwork, she actually got mad and defensive toward me and told me it wasn't HER fault I was upset. I ended up consoling her and assuring her I was not angry, simply anxious that a cohesive plan of action had still not been developed regarding entry into my skull. I think she thinks the world revolves around HER! In fact, I am starting to develop a whole new world-view.

This may seem obnoxiously obvious to some, and thrillingly New Age-y to others, but I am starting to think that everyone (you, me, the doctors, their staff, their patients, and everyone who is NOT their patient) believes the world actually revolves around THEM! As if there are billions of worlds, each revolving around isolated members of humanity. Therefore, collectively, we walk around in a world-revolving haze, unable to see that we are all revolving around each other. So, I guess there is evidence that the world is NOT revolving around me.

Of course, in typical Kurt fashion, tomorrow I will wake up and the paperwork will have been sent off, all the talk will be focused on the "Bump Surgery", and previously unopened doors will be flung wide in an effort to cut the darned thing out. So, evidence to the contrary, it will be proven that the world does, indeed, revolve around me.

Have a great night everyone!

Countdown Revisited!

I removed the countdown gadget. It was designed poorly. Besides, I have it firmly etched in my mind EXACTLY when the surgery is.

Monday, December 21, 2009

New Bump Discovered!


A new bump has been discovered. This time it is on the RIGHT Side! If you look closely, you can juuuuust make out the fleshy color and the hair growing out of it... ewwwww!!!!!!
Well, I may have to schedule a separate surgery to remove this one. It seems to be attached at my hip!

The Countdown Fiasco

I tried to add a countdown to the time of surgery on my blog. It was an utter failure. Either the gadget is broken or my ability to program it is.

Anyway, I'm not so sure that it wouldn't add to the stress level with the constant tick-tick-ticking away to zero hour.

I will give it one more shot and then be done with it entirely.

Tragedy Averted!

Today we almost postponed the surgery. Due to a gap between the time when we needed funds to when they actually became available, we were almost unable to afford to make the trip to Dallas anytime soon.

However, in the nick of time, we were able to make super special arrangements and no such postponement was necessary. Whew! Crisis bypassed. I can't believe how close I came to missing my own surgery.

However, I still have not heard from the Dallas Institute about my surgical plan. There is some pre-testing that they would like to perform in the days leading up to the surgery. However, I still do not know what these tests are, when they are scheduled, etc. I will have to call them tomorrow and request additional information.

Speaking of testing, I have made a spreadsheet of costs. I have given some thought to trying to keep track of the services provided, how much my insurance company was billed, how much they paid, how much I paid, how much had to be written off due to contractual obligations, etc. Melissa says there is not much interest in that kind of thing, but then... I'm not writing this for you. I'm writing it for me.

If I want to bore myself with facts and figures I should be able to do so. Am I right? (Or am I mentally compromised?) Am I talking to myself again? Great! I'm a wonderful conversationalist. What shall we discuss next?

Sunday, December 20, 2009

How It All Began!

So there's this bump on my head. Right above my eyebrow on the left side. You can't see it until I point it out, but then you can't NOT see it.



This picture was taken more than a year ago and you can see the bump here, but again... just a bump. Otherwise, that is one HANDSOME man!





So I go see a family practice doc, who sends me to get an MRI, which leads to a CAT scan, which leads to a visit with an opthalmic surgeon. He looks at the images and sends me to see a head and neck surgeon who sends me to go see a neurosurgeon (all within a week of each other).


The consensus: I have a bump on my head. No one knows what it is. Everyone is fairly sure it is not a cancerous tumour, as it has not killed me yet. (This method of practicing medicine is my favorite: Since you are not dead right now, it can't be anything THAT bad!)

The diagnosis: intraosseus (inside the bone) mass (bump) of unknown origin whose margins extend into the frontal sinus, left orbital socket and up to the meninges of the frontal lobe of the brain. It is about the size and shape of a robin's egg.

In this MRI image you can see the mass in the upper right corner of the film, as a round object right next to the brain. The words "Brain MRI" are printed right across the top of it.

This one is a little tougher to see, but the mass can be seen growing down into the eye socket (the round dark mass is the eyeball). The bulging area by the letter A on the slide is the mass and you can see it presses into the orbital area.

The CT scans show a more defined image, but they don't come in images I can post.

The etiology: I have had the mass defined as a possible osteoma, osseus fibroma, atypical fibrous dysplasia, or bone hemangioma. The medical community, so far, is leaning towards bone hemangioma.

The treatment: excision. That's right. They are going to cut it out. And since the mass is in the bone, the bone comes out, too. I am going to have a sizable piece of bone removed from my face.

So, remove the mass, rebuild the face. I ask around. Kansas City does not have an excellent reputation in the face rebuilding department. I keep asking. I found a place in Dallas referred to me by a friend, Cheryl (thanks Cheryl). I drove to Dallas with my wife, Melissa, and met a craniofacial surgeon and a neurosurgeon and had another CT scan. They don't know what it is, either. But they have MUCH more experience removing AND rebuilding skull material.

We scheduled the surgery for January 8th, 2010 and will be driving down to Dallas on January 4th, 2010 to be available for pre-surgery testing. We will be down there for about 3 weeks and I will do my best to keep this blog updated with as much information as I can.

For you readers, if you have any questions, comment on my blog and I will try to answer them as best I can. Have a wonderful Christmas and/or Hannukah!